March 9, 2014

The topic of pain is one that is not well understood- especially by those that treat it, rather than live it.  But this next story leads me to have hope there will be more advances in the treatment of pain. It is just a start.
"Research Institute report that they have identified a class of proteins that detect "painful touch.""(article)

June 13, 2012

costs of inaction

Not too long ago, Canada announced that one of the places getting budget cuts was to pain clinics. Just the other night, I decided to look up this new "screw-you" to pain patients, and came across a new paper, entitled: "'I live this life in pain'; Canadians with Chronic Pain Struggling to Find Help, Hope".-^1
When it is said that one in five Canadians suffer from Chronic Pain^2, this is unacceptable.  First came the war on drug, that ended up impacting Canadian Pain sufferers more than it does the individuals who choose to use these medications for the wrong reasons. The war on drugs crossed over into the medications category when they went after OxyContin.  There were seemingly benign changes made to make it tamper-proof for the individuals who want it for the high. Other regulations went into effect on March 1, 2012 ^3. For instance, the doctors that decide to keep treating their pain patients will now have to apply within one year to keep prescribing OxyNeo to their previous OxyContin recipients.  There has been no proper preparations for this. As all the doctors go to scramble, patients will be at risk of losing access to their maintenance medication.  Further, 'many provincial and federal drug plans have "de-listed" Oxy Neo'.^4  This means that there is no longer coverage.  Many people in this condition have lost their ability to work, to function the same as others, and to be limited by the pain. People that suffer from Chronic pain are isolated from the community. When you lose the ability to finish your education, or to work, you lose your independence. Family and friends also often turn their backs, because of the stress they deal with in having a friend in pain.  And the people that do stay, they try, but little things like whimpering or crying when you're in pain can eat at them.  The stress leads to sleep deprivation, and that sleep deprivation gets to your nerves.  Chronic pain sufferers are twice as likely to commit suicide. ^5   This is unacceptable.
Not to mention the Doctors that are scared off from treating a chronically ill individuals because of all of these new regulations, as well as the heat now being placed on doctors who prescribe narcotics to patients due to the celebrity attention that has been raised.  The only problem is, the average pain sufferer doesn't have that kind of power to get them to freely hand of unnecessary and redundant medications.  So once again, the only people ibeing hurt by these seemingly harmless new regulations are the people who live in agony every day.^6  Now doctors are deciding patients with a chronic condition that will require them to prescribe "high risk" medications, simply aren't worth the trouble. You  can see just how bad it can be in the MacLean's article which speaks of the ordeals patients have to go through to get in touch with a doc willing to handle their case:
Many adults still have trouble getting pain treatment—even before the delisting. One of Jovey’s patients was turned down by more than 20 doctors when looking for a new general practitioner to replace a retired one. It takes patience, extra work, and even some courage to take on a patient with chronic pain: in addition to the mountains of paperwork behind prescribing opioids, and the omnipresent fear of onerous inspection by the provincial colleges of physicians and surgeons, there’s just too much time required to deal with the complicated issues of chronic pain which—even on a good day—cannot be cured, only managed ^7.

 In the article "I Live this Life in Pain^8", it runs the numbers of people in pain and various wait times associated with publicly funded Pain Clinics:
Pain is virtually ignored in discussions about health reform. Wait times for treatment at publicly funded pain clinics in Canada average one to three years. The chronic pain clinic at Vancouver's St. Paul's Hospital has a 3 1/2-year wait list of about 1,300 patients. In Calgary and Ottawa, the wait time to see a pain doctor can be a year or longer. At the Alan Edwards Pain Management Unit at the Montreal General Hospital, the waiting list is 700 names long.^9
  
It goes on to say that "for children in pain, the situation is equally bleak".^10 Unfortunately, this is something I can relate to.  
My own case began in 2000. The doctor I had at the time (just as a GP) seemed nice enough, and trustworthy- though as a kid, you are brought up to listen and trust certain people.  We are told that policemen and doctors (among others) are trustworthy and will help you when you're in distress. So when you're told by your doctor that the source of your pain has been found, and he can  make it all stop, you believe him, no?  At this point, his nurse had my mother in a different room, my father was working Shift at the time, and no one knew what was happening. The whole reason for the apt was to get a referral to an orthopedic surgeon. Needless to say, the appointment did not go as expected.  After almost an hour of digging around in my foot with no consent, it was too late, and he had known he screwed up.  We kept being told, 'it'll go away', 'she's too young to have chronic pain', 'it just needs time to heal, be patient', and so forth.
The difficulty then came from finding a doctor both qualified and willing to take my case.  What I didn't become aware of until a serious incident brought it to light, but this doctor was too busy covering his butt, my health care was suffering.  Clinics weren't getting followups, it was like pulling teeth to get him to tell me about their assessments, and suggestions, and he was territorial to the point of threatening me.  All of this was happening between the age of 12 to 20.  It's inevitable that you will develop a fear of hospitals and doctors, and have some anxiety in those situations, but some doctors aren't trained to assess their patients, so they take it as an over dramatization, or something similar. Since then, I have been trying to find a pain doctor who is willing to take my case.  My first pain doctor post-bad GP, was a specialist in Palliative care, and dealt with other pain sufferers as well. I would say he was one of the least compassionate doctors I had met. He sent me to a psychiatrist as a part of this "three pronged approach to pain". When I went to discuss with him the need for help and progress, and that they psychiatrist had given up on my case (telling me to accept it, this is how life is going to be). I was then told he had retired and when I asked them if someone new could take my case...well, we're still waiting on that one.  Even so, the wait times are insane.  
The wait times for people looking for a Pain doctor can reach up to three and a half years.^11

There is an extreme financial burden placed on those suffering and those who are trying to help them^12.  It is all up to the doctor to assess and decide whether you are officially disabled or not, and sometimes their assessment is dependent on whether you walk a block, or two blocks. The criteria is nonspecific, and when you are dealing with chronic pain, it's a condition that changes from patient to patient.  Those that suffer from a pain condition will often develop other issues such as Anxiety and depression. The debate whether the depression should be treated as "depression" or as as symptom of the pain condition is still debated. What needs to happen is there needs to be a new approach to treating it, either way.  For myself, I never felt depressed.   I was active in the community, I loved the interests I had had since a kid, and I bounced back as hard as I could so I didn't get left behind.  It inevitably leads to misunderstandings. People see you out and about one day, and the next you're using crutches or a cane just to get around the house.  Especially as children, this creates hostile situations and bullying.  

These reports all show the same thing: There NEEDS to be a National Pain Strategy. Right now, the cost stands at $6 billion per year in health care costs ^13 and an estimated $37billion in lost productivity^14 This accounts for more than Cancer, heart disease and HIV combined. ^15
However, the biggest costs are those the patients themselves face.   

We need the government to hear our voice and realize that we need to help the people suffering before the numbers are too great. And instead of cutting funding we should be identifying which areas need more grants and need more clinics with PROPERLY trained in treating pain.
A recent study looked into the level of funding research into pain conditions count in the grand scheme. This is what they found: 
To determine the current level of research funding for pain in Canada, the Canadian Pain Society conducted a survey. Of 79 active researchers performing pain-related studies, 65 received funding
in the past five years amounting to a total of approximately $80.9 million. This is less than 1% of the total funding from the Canadian Institutes of Health Research and 0.25% of the total funding for health research.^16
Another statistic looks at the level of training and the number of doctors who are ignorant about prescribing or assessing.  They looked at the health care training compared to those who are involved in Veterinary care, and they found that "a survey of 10 major Canadian universities found that veterinary medicine students receive, on average, 87 hours of mandatory training in pain, versus 16 hours, on average, for medical students".^17
There is also "inadequate funding for research (just one-quarter of one per cent cent of all federal dollars for health research in Canada go to pain). ^18
This needs to change.  We patients are made to feel like we have no control over our lives. A good doctor does exist, but they are hard to find.  Not to mention the cost.  Canadians seem to think that the healthcare system is completely free access. There are so many people trying to fight for our rights but we need help.  There are new organizations popping up- some of which are led by doctors who recognize the situation  we're in.  Others are trying to qualify as a charity.  And one offers advocates to help people who have no one to help attend appointments to make sure we are not taken advantage of. 
There is so much more to discuss and so much more to the fight against Chronic Pain. I hope that through this blog, you will be able to understand from a personal level from both the patients and the doctors willing to help, but you will also able to be informed with all the facts.  I will go on to discuss those groups and more links of course, to come. 
-S
Sources:
1)http://www.canadianpainsociety.ca/pdf/Sharon_Kirkey_Chronic_Pain_Series.pdf
2)http://www.canadianpainsociety.ca/pdf/news_chronic_pain.pdf
3)http://m.theglobeandmail.com/life/health-and-fitness/chronic-pain-patients-collateral-damage-
   of-drug-abuse-policy/article551590/?service=mobile
4)http://www2.macleans.ca/2012/03/15/the-latest-opium-war/
5)http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706647/pdf/prm14113.pdf

 

March 26, 2012

Sufferers of chronic pain and the government’s war on OxyContin - Health - Macleans.ca

Sufferers of chronic pain and the government’s war on OxyContin - Health - Macleans.ca
I don't have much time so I won't write much.
I have been talking a lot about the Oxy Contin-Oxy NEO controversy here in Canada, and the way it came across.
No coverage was given to people legitimately using Oxy Contin, and what the policy changes means for them.
This article starts off with the statement: “Chronic pain is even worse to live with than lung, cardiac or liver disease. Bad chronic pain is connected with the worst quality of life. People don’t realize that it is a disease on its own, not just a symptom.”
It could not be truer.
I am in a strangle hold with my doctor, where he is afraid giving me any more pain relief will be doing harm. There's another form of harm, and that is doing nothing.
I would rather live a shorter life but be able to LIVE than live a long life like this. I am already having issues with my health that are not going anywhere, my liver, my large intestine is diseased with either crohn's or Colitis, and they can't even do a test to check because of other issues, where I am not digesting properly
On top of that, I am getting more and more migraines, nausea, and general pain.
My hands swell almost every day to the point of not being able to hold a pencil, I get headaches that if I ignore them and keep typing, turn into migraines almost all the time now, and yet, my mind is awake, active, and begging me to challange it.
\Do you know what torture that is.
Relationships are non existant, and can I blame anyone for not wanting to go through this with me?
It's not easy to sit there and waste away, not able to do much at all, and not allowed to drive, not able to work...I was always going to escape this hellish town, and now I am reliant on it. This is killing me. I want to be able to use my days as many as I have left, to live, and take what may come when it finally beats me. This is no life.
Anyway, sorry, it's just that's how bad things are when you're sick with this. then there's the judgment from others.
Anyway,
This article addresses a few things about  pain in general, and the coverage of the oxy conflict is getting some light other than just focusing on the addiction part of it
I hope you can read this, and send it to others, and raise awareness for this horrible illness.
thank you

March 7, 2012

"We need a War on Pain a lot more than we need a War on Drugs."-Andre Picard

Hey there. In Canada, we recently had all Oxy Contin production completely halted, and pulled off of shelves. That took effect early this month. I am a part of a few different Chronic Pain sights, and they have been very informative; I also watched the news coverage and articles to see how they covered it. The coverage up to today has been very poorly done. It was neither balanced, nor informative. CTV only discussed the angle of addicts, and others went a little further to talk about the effect on the addicts in detail such as the alarming rate at which this has been put into place does not give any time to make available safe detox centers.
When it does get replaced, Ontario has decided it will no longer cover it under benefits***. So what of the patients depending on it for legitimate reasons, as well as the concern over new regulations that will force patients to wait a minimum of three weeks to be approved for use of it. Doctors will now have to request the drug three weeks in advance. Which is fine if that is before you take your first pill, but by introducing Oxy-Neo they are forcing doctors to apply as if it were the first time being prescribed. What about the patients living in AGONY and now they have to contend with withdrawal, as well as elevated pain levels, and not to mention withdrawal can stress out the heart.
Not to mention those that are being prescribed Oxy will not only have to pay out of pocket, but they also may be prescribed an alternate medication, like Dilauded (one of the most commonly dispensed Opiate, as well as highly addictive, and more potent). The Oxy Neo will only be prescribed to the patients needing to transition for a year. This allows doctors to get them off the drug, or do their application. The chance of it being approved, however, is incredibly low. The doctor will first have to prove that ALL other options have been tried, and have failed.**
In the article, one of the pain-doctors I went to actually, was interviewed and commented on how CARP (Dr. Mailis is the residential neurological pain expert) has found "no evidence that any preparations or plans have been make to help abusers or addicts, or even help people with prescriptions that have been cut off by their doctors"*
It should not be that the victims of this war on prescription drug abuse the only ones that suffer are the people living in pain every day of their lives. Many doctors over prescribe medication. I have experienced that, but I also experienced the opposite- Doctors being too concerned to bother because of the regulations.
*The article written by the Toronto Star brought up a very good quote by Ann Marlow (How to Stop Time-a classic about heroin). "Opiate addiction only became a social problem when it became a social solution: When it addressed widespread longing and needs". Let's face it, much of the chronic pain that they treat is invisible, and if an illness exceeds the normal parameters of an injury or illness, then they are overwhelmed. Some decide they wanted to use their patient as a guinea pig, and others just say they can't do anything. Even many doctors that add pain specialist under their areas of expertise are not truly pain specialists. Often, they've merely taken a course, or so. Those that are specialists however, earned their title. But it's hard to locate the real ones amidst others who treat it on the side. That's another aspect that is not addressed: Most doctors out there are unaware of how to ween their patients properly, and there are not enough addiction site offering assistance** .
On the topic of addict related trauma: The biggest concern is the aboriginal communities. There is concern about areas that are considered high addiction levels. The aboriginal communities may be hit the hardest in terms of its addicts. It is surmised that one way or another there will be an epidemic in the higher addiction level communities due to this brazen move by the Ontario government. There are a few possibilities; this includes rise in crime rates, more drug trafficking across the border, turn to another, more potent drug, an extremely high amount of people needing help and monitoring as they go through withdrawal (which can stress your heart enough to induce a heart attack), and a rash of deaths related to this.
In the Article from CARP, they had sourced Claudette Chase, a medical director for the Sioux Lookout First Nation's health authority and a member of the Nishnawbe Aski Nations prescription drug abuse task force
*. She stated that a *third of the aboriginal pop^n in her area of Northwestern Ontario is addicted to prescription opioids. In some communities, it's 75%. Of thousands that need treatment...less than 10% are getting help.*."
The Globe and Mail recently wrote an article about this new move, and argued that the war on drugs should not end up victimizing pain patients-The title of this blog is a quote from him.
He addresses all of the parties of people that will be effected by this new move, spending a lot of time talking of Chronic Pain patients worries. So far, most articles only address the addiction issue.
He addresses in his article, 2 reasons why this public policy change is surrounded by so much controversy.
i)There will be a ripple effect created by this decision to remove OxyContin and tighten regulations that could have many "unintended consequences"***
And,
ii)That however well intentioned this move, "it ignores the harsh reality that chronic pain and addictions are sprawlling societal problems that extend far beyond access--legitimate or otherwise--to a single drug"
***
According to Picard, "there are fewer than 100 "detoxification" beds for those suffering withdrawal in Canada. The wait [time] for treatment stretch to six months and beyond. There are treatment programs that offer methadone and suboxone(similar to methadone), but those are in short supply"
***
This is unacceptable. If you're going to launch a war on drug abuse, why must they punish the legitimate pain patients who rely on it to survive. Choosing to make a move like this, they must also take on the responsibility of the consequences. The whole idea to pull this rather than marketing it, is to try and "Saaave the peeeeople" but in reality they are endangering those very lives by not offering the resources needed to make a safe transition.
Oxy Codone is very close to Heroin (hence the nick name of Hill billy Heroin) But the few molecules of difference is the difference between the side effects. That is why many who choose to get high will choose to use the drug by dissolving it, or chewing. The abuse of this drug has been linked to higher crime ratings** By not improving safe facilities with people trained who can help (not only the addicts, but also those pain patients caught in the crossfire).
Please take the time to sign the Canadian Pain Coalition's petition for better care for us pain patients, we deeply need it. It is primarily about allowing the resources to be out there more; it has no link to insurance company competition or asking for charity, it is solely about improving care, for example, by adding courses for doctors to inform them of what to do if a patient of theirs is a sufferer.
This Canadian Pain Summit is happening on April 24th in Ottawa, Please check this web site out for more information and links to petitions connected to this to the Canadian gov't, and I will post the link for the American Pain Awareness petition.
www.canadianpainsummit2012.ca
To conclude I will leave some numbers to get a better understanding. I think I mentioned them earlier. These are numbers from the CARP site:
-The OXYCONTIN INDEX
Ontario’s methadone caseload in December, 2010: 29,332 patients, 296 physicians, 105 offices
Ontario’s methadone caseload in December, 2011: 35,228 patients, 340 physicians, 120 offices
9,000 - Estimated number of aboriginals in northwestern Ontario addicted to OxyContin
5 - Estimated percentage of those receiving treatment
33 - Estimated percentage of Northwestern Ontario’s First Nations population addicted to OxyContin
75 - Estimated percentage of OxyContin-addicted residents in some of Northwestern Ontario’s hardest-hit communities.

This information was provided by
Health Canada, Ontario Health Ministry, Nishnawbe Aski Nation ***
This is obviously an issue close to my heart, and I thank you for taking the time to read this, and if you sign the petition, a sincerest thank you (the US one will be added in a couple days...have to re-loacate it.)
I do have some...good news I suppose that gives reason to keep trying to fins a way to manage this. I have been applying a concoction of different medical ingredients such as Gabapentin, but it is incredibly painful to apply, so it's been causing more harm than good, but I agreed to give it three weeks, so I kept up with the applications. Yesterday, an area of my foot which has had numbness in the surface, and a slight constant pain like walking on a nail but deeeep beneath the skin. Anyway, the other day, I felt this intense itch that was just below the surface- that kind of itch that it is too painful to scratch, but not scratching actually causes muscle tension and pain, so you have to find a way to calm the sensation down either with ice, or water, or anything else that might work. After the itch calmed down, there was an intense pain in that area, but closer to the surface was a tingling. This is a sign that maybe there is hope that with the right treatment, things could at least improve a little.
:) Thanks
-Samantha<:3}-}~~~~~


Sources:
*  http://www.carp.ca/2012/02/24/disaster-in-the-making-provinces-have-no-plan-to-help-ease-in-new-oxycontin-policy
** http://www.thestar.com/news/article/1140468--sudden-ontario-ban-on-oxycontin-means-misery-for-addicts-without-detox
***http://m.theglobeandmail.com/life/health/new-health/andre-picard/chronic-pain-patients-collateral-damage-of-drug-abuse-policy/article2359592/?service=mobile


-This one here addresses OXY CONTIN vs OXY NEO and what the differences are, and the concerns for those forced to rely on these new ones.
http://www.topix.com/forum/drug/oxycontin/T69J47JQ9K9A867U2

-http://www.theglobeandmail.com/life/health/new-health/conditions/addiction/health-addiction/oxycontin-delisting-not-the-answer-to-opioid-addiction-experts-say/article2349474/